MS isn’t all its cracked up to be, for me personally it’s reared it’s ugly head, even though it’s not me who is incapacitated. Husband in a Hurry hurt his back just bending down to his sock drawer, three weeks ago. It’s amazing how much it has affected my care.
He has been unable to get me on to the stairlift, which is needed because we live in a house and I’m wheelchair dependent. One might ask why we live in a house still, but that’s a whole other story. I need to be upstairs as we have no showering facilities downstairs. For two or three days, my daughter came in to put me to bed, but it was beginning to affect her own back which will not do as she is a mother of small children and holds down a job. At the suggestion of Adult Social Care, we moved all the dining room furniture that could be moved out and replaced it with a hospital bed! An offer of respite was also made in case the bed wouldn’t fit. So now I’m sleeping downstairs, showering has become an every other day event. This involves hoisting me on to the stairlift seat, which requires two people, one to pull me back on the seat safely and one to lower the hoist. I traverse up the stairs and transfer to a shower chair, which involves my daughter moving me from stairlift to shower chair as best she can, protecting her back. I have asked for a hoist at the top of the stairs, but it’s been pointed out that if one castor were to be balanced over the top stair, not only would I fall downstairs but the hoist would crescendo down on top of me. This is a freestanding mobile hoist as the layout of my first floor does not allow for a ceiling tracking hoist. You can see how complicated this is getting, can’t you?
I have never let MS take control of my life, however, this is becoming a farce. I am steadily losing control of my life, my choices and options are falling further away from my grasp. It’s things like not being able to choose which clothes I am dressed in; because they are upstairs and I am not. I cannot access my hair and tooth brushes and I hate asking for them. I cannot independently get myself up in the morning, or put myself to bed at night. When a member of my team is unable to perform the tasks required to help me, it highlights how reliant I am on others.
No one is to blame for this, it’s a case of reworking my lifestyle.
How can I make life better? Should I ask for more help, which doesn’t sit well with me and lose more of myself? Or should I take back command?